Patient and public involvement in doctoral research: Impact, resources and recommendations

Coupe, Nia; Mathieson, A. McL

doi:10.1111/hex.12976

Cited by 27 publications

(47 citation statements)

References 29 publications

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“…There is little evidence describing PPI in doctoral research [25,26]. Moreover, researchers rarely provide a complete picture of what happened during the research process.…”

Section: Discussionmentioning

confidence: 99%

Patient and public involvement in doctoral research: reflections and experiences of the PPI contributors and researcher

et al. 2020

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There is evidence in the literature showing that involving patients and the public in health research can have a positive influence on quality, relevance and impact of research. However, patients and the public are not always involved in all stages of the research. There is often no explanation as to why they were only involved in some stages of the research and not others. Additionally, there is often no description of researchers' or PPI contributor's experiences of involvement. This also raises another issue which is a lack of recording of impact such involvement can have on the research process and the people involved in the research. In this paper, we present what PPI in a doctoral research should look like by providing a detailed description of how involvement occurred from prefunding to dissemination stages of the research process. We provide some practical examples of how this was done and how involving patients made a difference to the research project. Finally, we present reflections from the patient and public contributors and the researcher on involvement in this project along with some recommendations for future doctoral and postdoctoral researchers considering involving public/patient contributors in their research.

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“…There is little evidence describing PPI in doctoral research [25,26]. Moreover, researchers rarely provide a complete picture of what happened during the research process.…”

Section: Discussionmentioning

confidence: 99%

Patient and public involvement in doctoral research: reflections and experiences of the PPI contributors and researcher

et al. 2020

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“…Volunteers were not paid for their time due to budget limitations. This is considered poor practice; however, budgetary limitations are not uncommon in doctoral research and can be a limitation in carrying out stakeholder involvement processes 52 . Future studies should consider building in a stakeholder process into the proposal and budget calculations of a study.…”

Section: Discussionmentioning

confidence: 99%

Stakeholder involvement in the development of trial material for a clinical trial

Rix

Branney

Breen

et al. 2020

Health Expectations

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Background Stakeholder involvement includes not just patients and public, but also those delivering treatment for example clinicians and students. Each stakeholder brings unique experiences to the process. The aim of this stakeholder exercise was to explore readability and understanding of the trial material for the future trial to be conducted by the authors: Biomechanical Effects of Manual Therapy—A Feasibility Study. Design Volunteers from identified stakeholder groups were provided with trial material which included the information sheet, consent form, questionnaires and home management booklet. They provided feedback on content (readability, understanding) and style (font, layout). An additional document was provided with genres of pictures to choose the most appropriate style to be used in the booklet. Readability formulas were used to calculate reading age before and after feedback to objectively measure ease of reading. Results The public group provided a layperson's perspective to clarify the information sheet for patients, whereas practitioner and intern groups indicated where information could be clarified. The reading age of all documentation decreased following feedback; however, templated sections of the documentation did not. The majority (87%) of volunteers chose coloured classic cartoons for the booklet. Conclusion This process highlighted the importance of involving different stakeholder groups in the development of research materials as each group made a unique contribution. Readability and understanding of the trial material were improved, feeding back into the consent process contributing towards fully informed consent. Patient or Public Contribution Public helped develop materials for a future trial but not with manuscript preparation.

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“…There is little evidence describing PPI in doctoral research. 25,26 Moreover, researchers rarely provide a complete picture of what happened during the research process. To our knowledge, this paper is novel as we present the journey of the PhD research project and PPI with examples of how PPI was conducted during the doctoral research (pre-funding to dissemination), personal accounts of the PPI contributors and the doctoral researcher reflecting their experiences along with the impact of PPI.…”

Section: Discussionmentioning

confidence: 99%

Patient and Public Involvement in doctoral research: Reflections and experiences of the PPI contributors and researcher

Dawson

Ruddock²,

Parmar³

et al. 2020

Preprint

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Background: Patient and Public Involvement (PPI) has received considerable attention in the last two decades and working in partnership and co-design have now become a prerequisite in health services research in the UK. However, there is a lack of evidence and consistency in recording PPI and related activities. Researchers and PPI contributors are encouraged to record and reflect on the impact of PPI on research. There is significant variation in the way PPI contributors are involved, and it is often limited to some stages of the research cycle than others, without any reflections on the decision-making process for such involvement or any transferable learning. This has resulted in failure to provide a narrative of the research journey including researchers’ and PPI contributors’ personal reflections of involvement. Therefore, this paper provides an exemplar of what PPI in a doctoral research context should look like by providing a detailed account of how PPI was embedded in a doctoral research project, the PPI contributors and researcher’s reflections and key recommendations for involving people specifically in doctoral research.Methods: A reflective approach was taken using data from PPI contributor and researcher notes, e-mail correspondence, meeting notes. Data is presented narratively to reflect on the experiences of involvement throughout the research cycle. Results: Undertaking PPI enhanced the quality and relevance of the doctoral research, contributed to the recruitment of study participants, data analysis and dissemination. Building trust and relationships with PPI contributors was key to continued involvement throughout the life of the project and beyond. There is a need to adopt flexible approaches rather than a one-size-fits-all model when working with PPI contributors. Reflections by PPI contributors and the researcher emphasises that involvement was a rewarding experience. Conclusions: This paper contributes to the wider literature by providing an exemplar of how PPI can be embedded in doctoral research and demonstrates the value of PPI to the research process and the individuals involved. We also present recommendations on how PPI can be incorporated by doctoral and postdoctoral researchers when planning PPI in their research project.

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Patient and public involvement in doctoral research: Impact, resources and recommendations

Cited by 27 publications

References 29 publications

Patient and public involvement in doctoral research: reflections and experiences of the PPI contributors and researcher

Patient and public involvement in doctoral research: reflections and experiences of the PPI contributors and researcher

Stakeholder involvement in the development of trial material for a clinical trial

Patient and Public Involvement in doctoral research: Reflections and experiences of the PPI contributors and researcher

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